I keep this blog in part to easily update family, friends, and other JA parents (and any other interested persons!) on how Anna is doing on her journey with Juvenile Arthritis.
Since Anna was first diagnosed in 1999, the terminology has changed. I believe that now children are diagnosed with Juvenile Arthritis, or Juvenile Iodiopathic Arthritis, et. al. However, I created this blog a long time ago, when people referred the disease as Juvenile Rheumatoid Arthritis. Hence the "JRA."

Tuesday, November 13, 2012

(This is going to be a LONG blog post! I'll warn you! Lots of thoughts today.)

Ah! How I love the ways God speaks to my heart in advance of "bumps in the journey." I'm involved (have been for a few years) with a great ladies' Bible Study, and this week, when I began my homework, two thoughts from Lisa Harper, the author of our current study, jumped out at me---resonated with me . . . .

"A huge difference lies between pursuing God's heart and seeking gifts from His hands. Between feeling sincerely grateful for divine blessings and feeling like you deserve to be blessed . . . . . . ."

and then

"The true opposite of arrogance is security. It's the deep-seated confidence that God holds us in the palm of His hand and nothing can separate us from His love." *from "Malachi: a love that never lets go" by Lisa Harper, published by LifeWay Press, Nashville, TN 2012

Pursuing God's heart and security. I'm learning to do the first and to really understand the second. So I began this week feeling sincerely grateful for all the blessings in our lives and feeling secure and anchored in God's love and care for us. That's the best place to be mentally and emotionally when there are so many areas in life where I also feel that that the Lord is saying to me, "Pay attention, here! Focus on the tasks at hand---now is not the time to have the 'cruise control' on!" (know what I'm saying?)So we head to Hershey today for Anna's appointment with the pediatric rheumatologist---it's been about four or five months since we last saw him. We were able to give him the good report on the eyes from the ophthalmologist, and both were agreeable to changing Anna's Humira dose from once every ten days to once every two weeks. Good news! He did say that from his experience, it seems that once young people get through puberty, the eyes seem to settle down a lot. Makes sense to me---the onset of puberty was when I noticed that both the eyes and the joints seemed to become issues again for Anna.And then we discussed the TMJs. Anna had been noticing that there are times when her jaw locks into place momentarily, and sometimes it shifts. When the doctor was examining all of Anna's joints as he usually does, he manipulated her jaw and asked questions, and found that her jaw shifted a bit as he did that (more on the one side than the other). I don't recall that happening at any previous appointment and joint-check. Her last MRI was in early August, and the results indicate that at some point, when Anna had active arthritis in the TMJs, the inflammation has caused the joint to fuse. But Anna has continued to use her jaw (to eat, talk, etc.), which has caused a probable fracture (besides the deformity of the fused joints). Anna's case is not severe, and she's not at the point where something HAS to be done (she can still eat and talk---the TMJ issues which she experiences are occasional---not constant). However, it now seems advisable to have an evaluation by a doctor in Philadelphia. Evidently, he's the "go-to" specialist on the East Coast for TMJ replacements. But Anna heard Dr. G. say, "Just because you go to see him doesn't mean that Anna has to have immediate surgery." In fact, it's not urgent. It's okay if we just make contact and strive to make the appointment during a school break or even sometime this summer. Dr. G. has referred other patients who had issues much more severe than Anna's.After we consult with this specialist, and after we see Dr. G. again in March, then he's going to refer us to another specialist at Hershey Med who does a lot of work with the TMJs and orthodontia. But we're going to take one thing at a time. And so the journey gets interesting again. We get to learn a whole lot again. We get to meet more specialists and be thankful that God has given them so much knowledge and intelligence. Although we don't personally know anyone who has been on this particular road before, it sounds as if Dr. G. has other patients (and their parents) who have, and I told Anna that I'm sure he would be glad to connect us if we feel at some point that we want to talk with someone who has experience with this.So for now, we continue to follow this path step by step, secure in our faith and the peace that comes from knowing that we are never alone on this journey.

Thursday, November 08, 2012

Our journey continues, but we're pretty much on an even keel. Anna had an appointment with the pediatric ophthalmologist about two weeks ago, and her right eye is clear of inflammation. The left eye is ALMOST clear--the doctor thinks there's just a trace of inflammation---almost too minimal for him to see. He's willing to have the Humira decreased if the pediatric rheumatologist is willing. We visit the pediatric rheumatologist next Tuesday. At that appointment, we'll hopefully get the results of Anna's MRI on her TMJs. We haven't yet heard about that, but it's okay (if I were worried about it, I would have e-mailed or called earlier)---I know from past discussions with the doctor that even if Anna continues to have active arthritis in the TMJs, there needs to be a lot of thought and care regarding the frequency of injections. Over the long term, too much cortisone injected into any joint can affect the tissue, and cause other problems.In many areas of my life, I've been thinking a whole lot about trust . . . . the people I trust, the people I don't trust, how I react to both groups, etc. I am so glad that I'm at a place in my life where I feel that I can trust Anna's doctors---not to be perfect people or to make the perfect decisions, but to make wise decisions, and to know that they are carefully considering and weighing our options for Anna (with a whole lot more knowledge and intellect than I have myself!). I continue to pray for them as they make decisions for us to choose from (and they do give us the background information and pros and cons we need to think about those decisions---I'm thankful for that!). I pray for our family to know the direction which we need to go when various options arise, and I am so very thankful to God that Anna's quality of life is almost as "normal" as a teenager's life can get (if you don't count the Humira shots every ten days and the Methotrexate and Leucovorin pills she takes each week). God has used this journey for her to develop in her a compassionate heart for people (among other character qualities). Our Creator has promised that He can use any situation for good for those who love Him---there's always some joy to find in the journey when we have a solid Anchor for the Soul!

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